Post-TB treatment completion experiences of children, adolescents, and caregivers from Cape Town

Background: Post-TB life is associated with a range of clinical, economic, social, and psychological sequelae, with limited data available on children and adolescents. We describe child TB survivors’ physical, emotional, and social post-TB treatment experiences, in a high-incidence setting in South Africa.

Methods: An explorative qualitative study was nested within the Umoya TB cohort between June and September 2023. We used semi-structured interviews and participatory methods, including body mapping, to explore participants’ physical, emotional, and social wellbeing. Data were analysed using a deductive thematic approach and a health-related quality-of-life framework.

Results: Thirty semi-structured interviews were conducted with 15 children/adolescents; median age 9 years (range: 5-15); 8 (53%) were male; 2 (13%) living with HIV, and 1 (6%) had multidrug-resistant TB. Most interviews were conducted with children together with their caregivers (N = 14). Interviews were done 11-61 months (41-month average) after TB treatment completion. All participants reported that TB significantly impacted their physical, psychological, and social domains, extending well beyond treatment completion. Children and adolescents perceived changes in their bodies like shortness of breath and physical pain following their TB episode, reporting various physical post-TB cure symptoms. TB-related stigma disrupted participants’ social relationships, especially among adolescents. Broader underlying socio-environmental challenges exacerbated the long-term economic impact of TB on household financial instability.

Conclusion: The negative impacts of TB extend well beyond children and adolescents’ treatment completion across multiple aspects of their lives. Future studies should prioritise the development of interventions to enhance communication and optimise follow-up care for paediatric TB survivors.